1. The Long Road to RIAT – My Story

Hi, my name is Rebecca and I am proud to say that I am this years Lockheed Martin sponsor through Flying Scholarships for Disabled People (FSDP). Yesterday I was formally presented with my scholarship by Prince Faisal of Jordan and I had the pleasure of meeting Lockheed Martin Vice President Jack Crisler. Jack mentioned that it would be nice for me to document my journey, I already write a blog about my illness, so of course I am delighted to send through updates. I thought the very best place to start would be to introduce myself and to tell you my story and how I ended up yesterday at the Royal International Air Tattoo (RIAT) being presented an incredible opportunity.

In May 2014, I was busy, I was planning a holiday to Mexico with husband, so we could actually spend some time together. I had been very busy with work, I was the Head of Compliance for a merchant bank and I had been seconded for several months to set up a Governance Department. I had my eye on the permanent role as Head of Governance, it was going to be a board level role and I was keen to make it as a member of the board, at under 35 I would have been the youngest board member of the bank. As you can imagine I was working 10-14 hour days, on top of that I had a 4 hour round trip commute to the office and of course with modern technology I was never really offline even when I was at home. Occasionally, if I managed to get home in time I would train in martial arts, as my husband is the instructor I could get away with being a little late J. I also used to ride a motorbike (I had a Kawasaki Z750R) and I was doing a PhD in my spare time. Fortunately, in financial services money laundering regulations dictate that all members of staff must have a two week, completely offline holiday, once a year. So off we headed to a 5* resort on the Mexican coast near to Playa del Carmen. Little did I know then that the world as I knew it, was about to come crumbling down around me.

To go to Mexico, it is recommended that you have routine vaccinations, no big deal, we went to see the nurse who did the jabs, it took all of 2 minutes, but those 2 minutes were to change everything. Mexico came and went and everything went back to normal. I was sat at work in a board meeting and I felt a crushing chest pain, I could barely breathe, but being terribly British I of course didn’t want to make a fuss. So instead of excusing myself from the meeting and getting my assistant to call an ambulance, I continued the meeting and the day at work but quietly text my husband from the meeting – in his day job he is a paramedic. My husband knows I am not one for making a fuss, so for me to be sending that he knew it was bad. When I eventually got home I was still struggling but I am very good at hiding things, we had a busy weekend with my step children and I had work to do and I certainly didn’t have time to be ill. By the Sunday my husband ignored my protests and called an ambulance, I was rushed into hospital with a suspected heart attack. But hang on, I am 34, fit and healthy, not obese, how could I have possibly had a heart attack! My ECG was showing something but bloods ruled out heart attack. I was sent off to see a cardiologist the following week, obviously, in between time I went back to work. After another ECG, an echo-cardiogram and a stress test I found myself sitting in the cardiologist office being told I had had a heart attack and I had a heart condition, I need an angiogram. 2 days later I was back in hospital for the angiogram, obviously having gone back to work in between. In my head I thought, well thats ok, they will put in a stent and that will be that. The day before the angiogram was my last day in the office, I haven’t been back since.

The angiogram was awful, it wasn’t my first time in hospital. During my early 20’s I battled cervical cancer and have had many operations because of that and 2 really major surgeries, so I am no stranger to hospitals and they don’t overly stress me out. The angiogram was a truly hideous experience as I suffered a massive arterial spasm in my arm during the procedure, the only time I have ever hit a 10 on the pain scale. When asked to rate the pain the response was a single tear as I couldn’t talk. After a lot of wrangling my very experienced and usually very calm cardiologist was getting a little stressed. He managed to get the catheter tube out of my artery after nearly half an hour (I am told I am under playing this - it was half an hour of lots of medications being injected directly to the artery and heart and having no effect and I was within minutes of being rushed to surgery). However the angiogram still had to be finished so it meant going in again for another try through a much larger artery.

So, in a rather spectacular fashion what the angiogram showed was that I had a vascular issue, which was resulting in a rare heart condition called Prinzmetal’s Angina. What this means is the arteries in my heart spasm to reduce or cut of blood supply to the muscles of my heart. Over the following year or 2 I worked with my consultant cardiologist and a professor of Cardiovascular Science to try to treat this condition. Unfortunately, we are yet to find a treatment that works and this results in me having between 15-25 angina episodes a day - some result in me having to be hospitalised but the majority I can deal with myself at home. During this time I started to get really ill, I had been under the weather since Mexico, nothing specific but just generally feeling really unwell. I put it down to the post-holiday return to normality and busyness.

To cut this already long story short, over the following 2 years I was really ill, I saw hundreds of doctors and then finally I saw an amazing consultant who managed to put all the pieces of the puzzle together and diagnose an underlying genetic condition. I have had it all my life, but the vaccinations for Mexico triggered a massive autoimmune response which has made me incredibly ill. After genetic testing I was formally diagnosed with Ehlers Danlos Syndrome. I have the hypermobility type with massive vascular cross over. This means that my joints dislocate and sublux so easily that I can dislocate a joint in my sleep or shaking hands. It has meant I need lots of physio, multiple trips to hospital if I can’t relocate a joint and a lot of orthopaedic surgery. Due to the hypermobility I fractured my spine in 2 places a long time ago, it was only last year that it was screwed back into place and is hopefully healing correctly.

To date I have had 21 operations. The vascular side of things means the 15-25 angina attacks a day, Reynaud’s (poor circulation) in my hands and feet to the point where I get frostbite blisters on my feet in winter. I also have vascular spasms all over my body, including in my brain which causes migraines and parkinsonism’s. I have an immense amount of pain, in my joints, vascular pain and neuropathic pain, I honestly cannot remember the last time I wasn’t in pain. I work with an amazing pain management consultant who is doing his absolute best to treat the pain but it is not as easy as you might think.

Ehlers Danlos is a progressive condition so I am trying to get used to the idea that this is never going to go away and its going to get worse not better. That’s not an easy Journey.

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